Looking good

One of the perks of having a serious illness is that I often receive comments such as:

“Wow, you’re really looking good”

“You really are looking great!”

I might be in sweat pants, have greasy hair and have bad breath and I still get this feedback.

These comments are often made with a tone of surprise, as if I really should not be looking this good.The surprise may be due to expectations about how a sick person “should” look. Or perhaps I looked so bad for a period of time, that the contrast now is unmistakable. Either way I enjoy the comments as they come.

Of course, I’m not usually quite sure how to respond. If I say “Oh, you’re really looking good too” am I implying there is a reason that they should not be looking good? Or am I implying that they didn’t look good before?  Or should I just say thank you and bask in looking good?

And should I start worrying if people stop telling me how good I look? If they look at me with furrowed brows and a concerned air should I rush off to the doctor and get my blood tests done? Or should I just assume that I’ve been looking good for so long that people now take it for granted?

Or perhaps I don’t really look good, but it’s just something that people say to sick people to make them feel good. Or there is a missing qualifier. “You look really good  [for a sick person that is].

Hmm. Maybe I’ll try putting on some make-up that makes me look gray and pasty and see what happens.

Sam

Tuesdays from the chemo unit, March 27, 2012

Looking around the chemo unit waiting room I wonder about all of the stories that are sitting here. What kind of illness do people have? How are they feeling? How strong are the drugs they are receiving?

What do they think about being here? Are they grateful for the wonderful treatment we get ? Are they anxious about how they will feel after the treatment? Are they frustrated with waiting? Are they worried about their future? Are they simply non-chalant, just passing the time.

I see some patients who look sick – they are thin and frail, pale, bald. Perhaps they have a cane or they are being pushed in a wheelchair. Others are stealth patients. They look healthy, they have all their hair.

Where have they come from today. Did they have to drive far? Did they have to leave work or are they working at all? Are they here alone or did they bring a spouse, a parent, a child, a friend? Are some coming from farms? Did they have to wake up especially early to do chores before coming. Did anyone fly in from the North? Do they have a regular seat on one of those tiny planes? Did they walk over from a nearby neighbourhood?

Where did they come from originally? Are some from exotic locales who are shivering because of the unexpected cold snap today? Are others from war-torn countries, poor countries who are grateful to be sick in this country in this time? Are there some  who are lonely for a homeland and find Canadians cold and unfriendly?

I want to connect, to learn the stories, to share mine. Yet I’m shy to sit down and begin talking. There is such a strong sense of privacy, of just holding it together that it seems rude to intrude. Occasionally I can perceive an openness and begin a conversation. For the most part, however, I simply imagine the stories behind the faces. I look for clues in expressions, in hands, in feet. In my imaginings, there is always a happy ending.

sam

Ultra Sounds Monday, March 26, 2012

Bonjour everyone!

Today’s poem comes from Charles Phelps-Penry in Shanghai. It wins the prize for the most exotic locale (at least from my Canadian viewpoint – maybe Toronto, Canada is an exotic locale when you live in Shanghai).

I like the terse, tense language of this poem. To me, it effectively captures the feeling associated with a diagnosis. You can read more of Charles’ work at his blog .

Here is the bio Charles shared with me:

I was diagnosed with Oesophageal (Gullet) Cancer in September 2010 during a routine check for something else.  The shock was huge and I was very scared at the start.  I quickly went through tests and staging (Stage 3 with lymph nodes involved) and then on into 11 months of treatment which, after major surgery and chemotherapy, has been successful. I am back at work, active and feeling good.  The cost was almost a year of my life, being torn from all I knew at very short notice as we live inShanghai, and returning to theUKfor treatment, leaving everything behind.  I’ve learned much about myself, including facing my own mortality, and I’ve seen my family, especially my wife go through hell for me.  But in the end I still have my life, and I am so very grateful for that.  It’s not what it was but no bad thing that.  Cancer no longer defines my life, though it did for a time.  And I have to watch out for the beast coming back for another go, but I’m ready for a fight.  The fight of my life.

When Charles shared this poem with me, I had to ask him to define “spiv” for me (it’s just not part of my Canadian lexicon). Here is the definition he provided:

A “spiv” is a term used during and after WW2 for people who used to trade goods on the black market, they were flash but seedy, could get hold of stuff that wasn’t easily available, usually illegally, and it is not a positive word. 

Sam

CANCER

by Charles Phelps-Penry

 

No introduction

no knock on the door

no polite cough or tug at the elbow

 

Just creeps in

unseen, insinuates itself

invisible and

microscopic

 

Bides its time

lurking darkly

a chancer, a spiv looking for a break

 

When it finds a good grip

it clings on for dear life

my dear life

 

Bastard

 

Can poetry make you a better doctor?

I found a treasure! There is an International Symposium on Poetry and Medicine coming  up in London, England on May 12. An international gathering to just talk about poetry and medicine!!! Themes include the intersection of medicine and poetry in history, the effect of illness upon poetry and, conversely poetry upon illness. Read more about it

Linked to the conference I also found an article that explores whether poems make one a better doctor. You can read the article  According to the authors, Johanna Shapiro and Sarah Mourra:

...[poetry] can help medical students by offering a unique method for re-examining self, others, and the world.

…poetry about going through medical education and the nature of doctoring can help students who feel isolated or are experiencing burnout. It can also provide insights into the socialisation process of medical education, and what practising medicine is about. (from BMJ Careers, December 8, 2010)

With this inspiration I did a bit more searching on poetry and medical students. There is a wealth of material out there.

For example, I stumbled upon the book Body Language: Poems of the Medical Training Experience (which you can find on Amazon)

I also found an interesting article by a doctor who dispenses poetry to patients and medical students. It’s called 


So let’s hear it for more poetry in the world!

Sam

I haven’t shared any books lately, here are a few to consider:

Elaine’s Circle: A Teacher, a Sudent, a Classroom and one Unforgettable Year by Bob Katz

This story is about a remarkable teacher in Alaska and the community she created in her classroom. This community became very important the year that one of the students was diagnosed with and ultimately died of a brain tumour. It sounds sad, but I actually found it an uplifting book about the power of community.

Most of me: Surviving my Medical Meltdown by Robyn Michele Levy

Most of me chronicles Levy’s experience of being diagnosed first with Parkinson’s Disease and then, eight months later, with breast cancer. She can be bitingly funny as she tackles her “diverse disease portfolios”.

Bearing Up with Cancer: Life, and living with – Dr. Annie Smith

I haven’t read this one, but was intrigued by the description on Amazon:

“Bearing up with Cancer chronicles the life of Annie Smith and her battle with cancer. An honest, intimate and humourous book about a vivacious woman who taped chocolate bars to her abdomen as an energy source for her surgical team.”

 

Enjoy

 

Sam

Tuesdays from the chemo unit, Mar 20, 2012

 

It’s a beautiful spring day here in Toronto. I was happy to have my usual walk through Chinatown this morning, despite running late. Today I particularly noticed the beautiful Van Gogh inspired mural on the paint store at the corner of Huron and Baldwin. Big swirling strokes of blues, greens and yellows stand out among the winter brown of the neighbourhood.

Meanwhile at the chemo unit…..

I was thinking about beepers today. Once you have checked in at reception and received your little bracelet (one receptionist always calls them diamonds and sapphires), you are given a beeper that allows you to roam while you wait your turn. Everyone sits around the waiting room clutching their beepers, waiting for the magic moment.

The beepers are loud. They are meant to be heard. Everyone in the waiting room hears every beeper. If you happen to have it down on a counter or table, the sound is amplified five-fold. There is no discreet way to be beeped.

When mine beeps, I feel as if I have won the lottery or as if I have rolled up the rim to win the fancy car.   I guiltily go to claim my prize, feeling apologetic toward those that have not yet won theirs.  It may seem strange to have the words “I won” and “the chemo unit” in the same sentence, but it’s the way I feel. I get a little frisson of excitement when mine goes off. “Bingo!!” I want to yell.

When the pager goes off, I’m directed to a particular chair number in a particular unit. My winning number this time was lucky chair number 51.

Today, in addition to my regular medication, I received an iron infusion. The treatment sounds like something that I might get at the spa. “Oh yes, darling, you must get the iron infusion. It will do wonders for your skin tone. ” I appreciate getting the iron, it makes a huge difference to my energy. But I must say it is disconcerting to have something so brown flowing into my body.

Now I’m just imagining the little molecules of iron coursing through my body, telling everybody else to get out of the way and pumping up the energy. Go little iron molecules!

 

Sam

Ultra Sounds Monday, March 19, 2012

Happy Monday!

Since I began working on this project, I have had the opportunity to connect with many wonderful people who are working in the world of creativity and cancer. One of these people is , an author and facilitator of expressive writing workshops for people living with cancer. Sharon’s name comes up often in the context of cancer and creative writing. Her workshops sound powerful and significant for those who participate. She also moderates a blog called , where she offers weekly writing prompts for people living with cancer.

I have been enjoying corresponding with Sharon. Though busy, she has spared time to offer me much advice and encouragement for Ultra Sounds.

Below is an article that Sharon wrote for the September, 2011 issue of . She has kindly offered to let me repost this article in the blog.

Sam

WRITING IT OUT

 

by Sharon Bray

Nearly twelve years ago, I sat in a surgeon’s office, feet twitching with impatience. I checked my watch. I’d waited twenty minutes. If he didn’t appear soon, I was going to be late for the meeting I’d scheduled nearby. I reached for a magazine. National Geographic, Sports Illustrated, an old issue of People. Nothing of interest. I sighed and check my watch again.

“Hello, Sharon.” The doctor came into the room, a file in his hand. I smiled.
“Hi, Dr. C.” My eyes darted to the file and back to his face. I felt a flicker of 
     unease. “So? What’s the verdict?”

It had been exactly one week since the procedure, a biopsy of my left breast, ordered the same afternoon the radiologist pointed to the constellation of calcifications visible on a mammogram and sent me across the courtyard to the surgeon’s office. My mammography was routine. The biopsy seemed, at the time, little more than precautionary, just to be sure. It was nothing to worry about.

Dr. C. sat down in a chair across from me, opened my file and studied the paper that lay on top.
“It’s cancerous,” he said. “Malignant.”
“Cancerous?” How could it be cancerous? I forced myself to pay attention, to make sense of the jumble of 
     words coming from his lips.
“Early stage. Non-invasive, but…”
“But?”
“We need to take care of it right away,” he said. “Left alone, it’s a bad act.”

I nodded my head as if I understood what he was saying. A bad act. “So, what’s next?” Cut to the chase, I thought. I have a meeting to go to. I don’t want to be late.

A lumpectomy was scheduled for the following week. “Fine,” I said, sliding off the exam table. At the door, I extended my hand to shake his. “Thank you, Dr. C.,” I said in my best professional voice, but the doctor didn’t let go of my hand.
“Sharon,” he frowned at me. “Are you all right?”

Of course I was all right. I had a meeting. If I hurried, I could get there on time.

It would be weeks after the lumpectomy, after the endless days of radiation and multiple appointments with a team of specialists, before the reality of cancer began to sink in. I existed in a fog, disbelieving and numb. I donned a blue hospital gown in the radiology department every afternoon and swallowed a Tamoxifen pill every morning. Still, I felt like a phony. How could I have cancer? I didn’t look any different.

I began to experience some unexpected side effects to treatment. My digestive tract suddenly malfunctioned. I lost weight. I cried a lot for no apparent reason. My husband and close friends expressed concern, but other than the conversations between my doctors and me, I avoided discussions of cancer. I carried guilt around like a sodden backpack. Other people had real cancers, the kind that were life threatening. I’d gotten off easy. Finally, at the urging of a friend, I signed up for a summer creative writing workshop.

Writing has always been the refuge I turn to in any difficult period of life. I’d filled dozens of notebooks with emotional outpourings after my first husband’s sudden death, but this was different. I’d be writing every single day for a week with a group of strangers. I balked at the idea, and considered withdrawing several times, but something kept pulling me toward it. I showed up on the first day of class, nervous, but determined to stick it out. I quickly discovered a gentle and encouraging instructor, and under her guidance, a safe and supportive writing environment. Nevertheless, I wore my protective veneer like a suit of armor, choosing to write stories that revealed nothing about what I was going through at the time.

On the very last day of the workshop, the instructor passed around a straw basket filled with slips of paper, a single line from a poem written on each. I closed my eyes, reached into the basket and drew a slip. I opened my eyes and read, “The hospital corridor was dimly lit.” My heart lurched. I stared at the words for a moment, took a deep breath and opened my notebook to a blank page. Words poured onto the paper. I described the radiology waiting room, blue hospital gowns, my silent companions, my feelings of guilt, my fear when the technician called, “Ms. Bray?” At the end of twenty minutes, I had written several pages.

When the instructor asked who would like to read aloud, I timidly raised my hand. “I will,” I said.

I finished reading and nervously waited for the group to respond. One by one, they began, describing how my words had touched them. Clearly, this was the most powerful piece I’d written all week. I felt something inside me open up. I had begun my journey of healing. Writing gave me the key to unlock the door, write into my experience, make sense of and discover meaning from it.

Cancer—or any other serious illness—changes us. Perhaps, as poet Jane Hirshfield said, “Illness remodels us for some new fate.” A year after my diagnosis, I began leading expressive writing groups for men and women living with cancer, providing the same supportive environment for them to write and share their stories of cancer just as I had experienced the summer before. I’ve been leading those writing groups for eleven years now, and thanks to the cancer survivors who write and share their stories with me, my life is richer than ever.


Bio: Sharon Bray is the author of two books on the healing power of writing during cancer: A Healing Journey: Writing Together through Breast Cancer (2004) and When Words Heal: Writing Through Cancer (2006). She leads ongoing writing groups at Scripps Green and Stanford Cancer Centers as well as a writing workshop for faculty and students of Stanford Medical School. She also is the author of the blog, , which features weekly writing prompts for men and women with cancer. For more about Sharon, see.

As I immerse myself in my own writing , I have sought out resources to help me develop my craft. I thought I’d share with you some of my finds.

A few months ago I told you about Sue Healy’s blog called .  I like her writing and find her blog entries useful and entertaining. She muses about writing in a thoughtful manner.

is another blog that I’m enjoying more each day. The author, C.S. Lakin, provides some wonderful grammar advice, discussions on the shape of a book (eg. she’s taken quite a lot of time on the first page and the first sentence) and poses challenging questions to the group. I look forward to receiving her postings each day.

I just joined It’s early days, but when I turned to it yesterday, the first page I saw was an excellent posting on writing memoirs. Her blog is on the top 10 list of blogs for writers.

I’ve also joined a group moderated by . This is an entertaining blog that is packed with information on writing and publishing.

I know there are many more excellent resources out there. Feel free to share yours.

 

Sam

I’m not usually one to toot my own horn, but I feel especially pleased with a recent review of the blog. You can read the full review .

Expressions like “excellent idea”, “fantastic realization” , “fascinating” and “inspirational” only bring a small blush to my cheeks. I didn’t even pay for the review!

 

Sam